Folklife!

Every year over Memorial Day weekend, I celebrate the start of summer at the Northwest Folklife Festival. I usually go to the big Balkan participatory dance on Sunday night and of course sing with my choir, Dunava.

This year, being on chemotherapy made going to Folkife complicated. On Friday I was supposed to meet a friend from California for dinner, but I had a crappy day and it was too cold and wet to go out again. On Saturday I felt fine in the morning but crashed hard in the evening. On Sunday evening I felt better, and asked Rik to take me to the Balkan dance. Although I limited my participation to the slow and easy dances, it was still great to be there, to hear the music, see my friends, and get to dance a little bit.

Today started with morning minyan for my dad's yahrzeit. Afterwards I needed a break and tried to nap, in the hope that I'd feel well enough to hear Dunava sing. Although I couldn't sleep, that rest helped me to get out again at noon. We went to Folklife, bought some lunch, and the food also helped give me energy.

I sat in the main court at the Center House, eating my lunch and watching the dancers. There was Cajun music playing, and I felt out of breath, tired, and hungry. I had my own small "pity party." I thought I would never get to dance again and was so jealous of all the people having a good time without a care in the world (or so they seemed to me).

But we went down to the theatre where Dunava was to perform, met up with friends, found a seat, and I began to feel better. Maybe it was the food kicking in, Maybe it was getting to listen to friends sing beautiful Balkan songs. Either way, my funk lifted and by the time Dunava came on stage, I was back to feeling my glass is half-full.

In the end, despite my hitting a wall after only 2-3 hours of activity, I still was able to do everything I normally do at Folklife. The sun came out after a long, cold, wet weekend. And that felt good.

Remembering Dad

Today is the second yahrzeit for my father, Sheldon Charles Cohen, zichrono l'vracha, may his name be a blessing.

In his memory, last night I lit a 24-hour yahrzeit candle and this morning we went to morning minyan. Since it was a Monday, in addition to the regular short service, we read from the Torah. And as the daughter of a Kohen, I was honored with the first aliyah. (Miracle of miracles, there were four Kohanim AND a Levi present!) At the end of the Torah service, mourners have an opportunity to remember their loved ones in the prayer El Maleh Rachamim (God full of compassion). Although my still-weakened left arm prevented me from holding the Torah, I was able to chant the prayer.

Our shul also gives mourners the chance to say a few words. Here's what I said about my dad:

My father enlisted in the US Army in 1945, at the tail end of World War II, just before he turned 18. Given that his yahrzeit fell on Memorial Day this year, I think he'd want me to tell you a little bit about his service to our country.

For my dad, the war was an opportunity for a very young man to see the world. Serving in the Army Corps of Engineers as a truck driver, he once ran out of gas somewhere in France. Having learned a little bit of French, he hiked back to the closest village, where he made a telephone call. He said to the operator, in his Bronx-accented French, “Le militaire American.” The operator didn’t understand his accent, so he repeated “Le militaire American.” Eventually they connected him and the Army came by with more gas.

Because my dad loved to feed people, after the brief service, Rik and I offered everyone a nosh of bagels and cream cheese, orange juice, and a special treat my father loved -- key lime tarts.

Praise for Swedish Medical Center

I finally wrote to Dr. Rodney Hochman, chief medical officer at Swedish Medical Center to praise the truly excellent care I received on the night of March 29, when I fell and dislocated my elbow. He responded the same day and he liked my blog!

Dear Jill,
Your email this morning was a great way to start the day. I will make sure that the group in the emergency department hears about your experience. I usually try to spend a least a half day a week at one of our clinical sites to see our people in action. I continue to be impressed with the quality and compassion exhibited by our people. Your blog and Rik's photos were also very insightful. Regards, Rod

And here's my original email (sent at 6 AM when I had insomnia yesterday):

After the Passover seder, around 10 PM on March 29, I slipped and fell on wet pavement, injured my arm and was taken by ambulance to Swedish First Hill, where I received truly excellent care. The ED doctor (who had just left his Passover seder) and nurses all treated me as though I was a family member. They listened to and honored my requests, addressed my significant pain, diagnosed a dislocated elbow and attempted to put the bones back into the joint. When that proved unsuccessful, at around 3 AM they called an orthopedic specialist. I was fortunate to go under
the care of Dr. Bill Wagner, who successfully reset my arm and has been a caring, compassionate physician ever since.

I passed a long night at the ED and I only wish I remembered the names of the staff who helped me so this letter could go into their personnel files. Swedish is fortunate to have such employees!

Swedish is always my hospital of choice.

A rough day

Yesterday was the first time in seven+ years that I felt disabled.

Between more blood pressure issues that caused stress and anxiety while I was driving (in the rain); frustration with my slow-to-recover left arm and how little I could do at yoga; insomnia, and general fatigue from the cold and wet weather, I actually felt handicapped.

It was mostly the dislocated elbow. But the cancer and treatment side effects added so much more to my whole day that I was full up to my eyes and fed up with everything. Even taking Ativan and only doing yoga breathing didn't help enough.

By the times yoga class was done, and I had eaten something, I realized that I should have turned around as soon as I felt poorly and gone home. But no, I'm too stubborn for that. I had to go to yoga, get some lunch, go to the market AND pick up RIk after school as planned. At least I had the presence of mind to cancel our dinner plans at Folklife.

I was such a poor judge of my own stamina and wellbeing that I took a second 0.5 mg Ativan in the car while waiting for Rik and let him drive. He was great. He carried in all the groceries, put them away, made up the bed with fresh sheets and let me take a nap there while he also fed and walked the dogs.

I slept more than two hours and awoke feeling more like myself, was able to prepare dinner and eat it, wrap my arm with the lymphedema bandaging, and even a read a little. Sleep really is an excellent healer for me and I am sure my middle of the night insomnia had a lot to do with my feeling lousy all day long.

Now the goal is not only to recognize when I feel poorly but to stop and listen to my body, then to go home if that's what's needed. Wish me luck on this. I get my stubbornness from both parents.

Insomnia

There are times when I just can't sleep. Even after taking a sleeping pill, I occasionally awake in the middle of the night. I woke up at 3 AM and after tossing and turning, taking an ativan for pain, and practicing my yoga breathing, I was still alert an hour later.

I don't feel particularly stressed. If anything, the reverse: my hblood pressure feels normal; there's a long holiday weekend coming up which I get to celebrate at the NW Folklife Festival; I have no chemo on Monday to interfere with that enjoyment; and I was able to get tickets to a local production of one of my favorite pieces of musical theatre, Leonard Bernstein's Candide.

This is when the internet helps. I can post to my blog, commiserate with my online list serv, check email, and even shop (if so inclined). What I can't do is sleep.

I hope that when I lay down again in a few minutes, my mind will stop spinning its wheels and I will relax and fall asleep.

Onc update

I saw the oncologist today and he says the following:

Heart issues might have been caused by IV Zofran. We looked at alternatives and they all carry the same 5% or less risk for cardiac side effects. Since I've had so little nausea with the Abraxane, my next chemo will be Abraxane only and no anti-nausea pre-meds. I did not notice any heart irregularities when taking oral Zofran for a queasy tummy after the first two rounds.

At my request I get next Monday off from chemo so I can celebrate the Memorial Day holiday by attending the NW Folklife Festival and hearing my choir Dunava sing. There was no way to do both, so I am glad Dr. G listened to me! He is very supportive of my need for a high quality of life.

My blood pressure was again slightly elevated but he was not worried. My heart rate was steady. I am having some shortness of breath when walking a couple of blocks but hopefully that will disappear in the coming days.

He ordered a chest/abdominal/pelvic CT. I haven't had a scan in just over one year.

And finally the big question: How long will I be on the Abraxane? When I have a good response plus two months. What's a good response? Reduced lesions as seen on a scan. (Hence next week's scans to have some sort of a baseline.)

Jill sings at CBS annual meeting

New shul prez

On Sunday our synagogue, Congregation Beth Shalom, held its annual meeting and I was elected president of the board for the next two years. There were an unusually high number of members present. The business included a report from the outgoing president, a salute to volunteers and recognition of the volunteer of the year, by-laws revision, approval of the slate of directors and of the annual budget.

I know all the above would be kind of tiring for people to listen to for more than two hours, so I decided that instead of being another "talking head," I would sing my comments. I rewrote the words to the same Serbian drinking song that I performed at the Dunava concert. Here's the full text. I tried to post a video of my performance but was unsuccessful. However, it sure got people revved up about the synagogue!

I must begin by ‘fessing up. Many of you know that I recently started another chemotherapy to treat my metastatic breast cancer. Today I appear before you in very traditional Jewish garb: the tichel. Usually worn by married Orthodox women as a sign of modesty, it also suits women who have lost their hair to chemo!

Now on to the CBS presidency. When Steve Perlmutter and Ron Schneeweiss asked me to consider becoming the president of Beth Shalom, I thought long and hard and spoke to many people about what I should do. Rabbi Borodin gave me truly excellent advice. She said, “Do it because it brings you joy.”

In the Cohen family, we have a tradition of celebrating happy occasions by writing song parodies. We take a familiar melody, maybe from a Broadway musical, and write new lyrics to reflect our simchah.

Some of you know I have spent more than half my life dancing and singing the music of the Balkans. I’ve always wanted to find crossover between my love of Balkan tunes and Jewish life.

So in the spirit of my family tradition of re-writing songs, and taking the rabbi’s advice about finding joy in being your president, with some help from a friend on the accordion, I have rewritten a Serbian drinking song called Evo Banke Cigane Moj. I think you will want to sing along with these new words!

// Beth Shalom, it is our home
A Jewish home for you and me //

// Rabbi leads us on our way
Members donate money, time and say,
“Beth Shalom, it is our home
A Jewish home for you and me.” //

// Lift your glass to communal success
In ‘68 we started to progress //

// Eating, learning, praying in a group
People thrive in our communal soup.
Beth Shalom, it is our home
A Jewish home for you and me //

La la la
Beth Shalom, it is our home
A Jewish home for you and me!

Chemo today

I had another relatively easy chemo day, although it started out with a little frustration. I was supposed to be on a three-week on, one-week off chemo cycle, but missed a treatment on May 10 due to low counts. By the original plan, today was supposed to be the week off, and therefore, although Dr. G's office had set up today's appointment, he had not entered orders into the electronic system. Fortunately, the chemo nurse was able to reach him by pager while he was rounding in the hospital, and he entered the orders quickly.

From there the routine went a bit more smoothly. Down to the lab to have blood drawn. Back up to the treatment center; get settled in a chair. Find out that the lab hadn't drawn a creatinine sample to test liver function, and because this was a Zometa day, it was an important test which Dr. G had not placed in his original lab orders. (He wrote it later, after I had already been to the lab.) The chemo nurse confirms that he wants the creatinine test, takes another tube of blood and hand carries it down to the lab. She makes another call to Dr. G to get his okay for me to have both Abraxane and Zometa.

At my request, the chemo nurse took my blood pressure three times (before, during and after chemo) and used a stethoscope to listen to my heart for a full minute. My BP was at my usual low normal each time and my heart was beating 72 times/minute. She recommended that if I experience more high blood pressure or other heart issues to call Dr. G and be seen right away or go to the emergency room for an EKG.

The day began at the cancer institute at 8:15 AM. At 10:15, we started the Zofran pre-medication. At 10:30, Abraxane. And at 11:30, Zometa. I was done by 12:40 and felt good enough that we went to lunch with a friend who came for a visit. It's only five hours, and I have all the time in the world, right?

Increased blood pressure from zofran?

A friend from a support group forwarded this link to me.

Zofran Side Effects - for the Professional

Cardiovascular
Rarely and predominantly with intravenous ondansetron, transient ECG changes including QT interval prolongation have been reported.

General
Flushing. Rare cases of hypersensitivity reactions, sometimes severe (e.g., anaphylaxis/anaphylactoid reactions, angioedema, bronchospasm, shortness of breath, hypotension, laryngeal edema, stridor) have also been reported. Laryngospasm, shock, and cardiopulmonary arrest have occurred during allergic reactions in patients receiving injectable ondansetron.

It could be that my recent increased blood pressure etc. is due to side effects from the intravenous zofran I received last Monday before getting Abraxane. You can be sure I will tell the chemo nurses about this and get them to ask Dr. G to not give me IV zofran next time.

Given that I've had so little nausea, and that not for several days after each chemo, perhaps I don't need any anti-emetic pre-medications before chemo at all. I will ask about this as well.

The good news is that my blood pressure seems lower today. Although I haven't measured my BP, my heart is beating more normally.